Just a quick question really but is it possible to get a positive JAK2 test and not have an MPD? I was previously tested twice positive and twice negative for JAK2. My blood levels are on the edge of high normal atm but I’m not sure if even if this is so, as I’ve had a positive JAK2 before it means the MPD is there but stable or can it mean something else? I’m not able to see a haematologist until my bloods go out again (have been relatively stable for at least 10 years though I’ve noticed them rising slowly again over past few years).
Thank you
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Chaucer89
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It’s hard to pinpoint symptoms as I have a multitude of medical conditions so I’m mostly going by blood work than anything. I do have an enlarged spleen though. I was actually diagnosed with PV when I was 14 but then my bloods went stable (though I was heavily anaemic at the time) and I got a negative JaK2 test after 2 positives and the oncologist I saw just discharged me. My latest blood work shows Haemocrit, RBC and Hb all on the very edge of normal so I’ve organised to have 6 monthly blood tests from now on to keep an eye on it. It was more wondering whether have a positive JAK2 means a definite you have an mpd or not really rather than needing to see the blood work tally with it to know for sure.
Nope they never said, I got two positives and two negatives. I was officially diagnosed and then I had a major op, lost a massive amount of blood, had transfusions, became severely anaemic and the oncologist was very dismissive and said to just keep myself that anaemic to keep my bloods down (I couldn’t as the leg cramps I was getting from it were literally clawing at the wall level agony) and I was too young to question it myself like I would these days (I’m 31 now so it’s been two decades since) So just been leaving it but it bothers me a lot not knowing for sure really…
The main reason I’ve been asking if those posts regarding the vaccine and antibodies, I’ll be interested to see what happens with all that and if those with mpds are recommended to get antibody tests after vaccines Id have to see id doc agrees to do a test.
Following. My bloods are borderline and are just checked every 4 - 6 months. I tested JAK2 neg, but was told it would probably test positive in the future. Biopsy not offered as borderline (in line with NICE guidelines), but also told likely to be inconclusive anyway.
Not unless my bloods went abnormal, NHS budgets and all. I’m having 6 monthly blood tests and next one is October but have been tempted at times to look into getting Jak2 done privately if I can find somewhere and save up…
Crazy- we are all so different. If you have the mutated gene then it’s is in my opinion definite. I was told by a leading heamo that you can have the condition but not elevated blood readings.Hope you get answers soon.
The short answer to your question is the yes it is possible to be JAK2 positive and not have any symptom of a a MPN. There are people in the general population who have no symptoms. Some of the more recent research indicates the mutation is most often acquired in early childhood but that it can take decades before a disease becomes evident.mpn-hub.com/medical-informa...
There is a bit more about this topic in the literature. Here is one example.
What you are reporting is most odd. On the absence of treatment, your mutant allele burden would not be expected to decrease. No hematologist would tell you to keep yourself iron deficient to control erythropoiesis unless treating for it. The consequences of chronic iron deficiency would preclude doing that. Just discharging you also makes no sense given your history. Pediatric PV is extremely rare and most docs would not know much about how to handle it. There are only a handful of docs with this expertise.
I would suggest contacting a MPN Specialist directly to explain your history and request to be seen. Do not wait to become symptomatic again. That would be irresponsible. You have a valid concern and your treatment needs change as you age. It is time to be seen by a MPN Specialist, not just a regular hematologist. Here is the list in case you have not seen it recently. mpnforum.com/list-hem./
You do sometimes have to go outside of regular channels in some healthcare systems. It is the only way to access proper care. It is also your right as a patient to advocate for yourself and to arrange for specialist care for a rare condition.
Please let us know what you learn as this emerges. We can all benefit from shared knowledge.
I agree with you about getting an MPN Specialist.. I have one - I am Jak 2 pos and get my bloodwork done every 6 weeks- occasionally need a phlebotomy to keep blood count in checkI take no medication for my Polycythemia except the phlebotomies- I was taking low dose aspirin but that didn’t agree w my stomach for some reason
Was diagnosed 3 years ago but had symptoms long before that.. ive also been anaemic during the past 3 years- it’s a balancing act but I feel really well, am able to exercise daily and I still work and I’m 69 - I know I’m lucky to have great medical insurance and a great dr so that helps a lot with my peace of mind.. I wish everyone could benefit from that..
It's my understanding that none of the Myeloproliferative Neoplasms are curable, (short of having a transplant). I'm not sure of your age, but Jak2 testing didn't begin until about 15 years ago. I was diagnosed with Essential Thrombocythemia in 2000, and was tested for Jak2 in 2008. If possible, I would try to get copies of my medical records.
I was diagnosed after testing positive for JAK2 in 2004..thats 17 years but maybe I was one of the first being tested if this is actually the case? It definitely was 2004.
« The JAK2V617F mutation has a prevalence of 0.1–0.2% in the general population,but its clinical implications are still unknown for those individuals harboring the mutation without overt signs of a myeloproliferative neoplasm. These individuals, who often have less than 10% mutation burden, may suffer from a latent form of myeloproliferative neoplasm; however, a mutation burden cut-off point indicative of disease versus no disease has not been established for JAK2V617F mutation positive individuals. For these individuals, it is also unknown whether the JAK2V617F mutation burden will change over time »
Very interesting, thank you for this. I’m not sure the details of mine..the results I have doesn’t have any mention of how much burden (if that’s the right way of thinking of it) my tests had…maybe the test was so new when I had it done…I’m thinking of saving up to see someone private just to discuss it and see if they’ll do the test again. Definitely won’t get anywhere nhs wise atm.
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